Monday, November 14, 2011

Tracking the triggers of lupus - basking in the benefits

A couple of weeks ago, I wrote about my latest trials with Bernadette's eczema. We were drowning in lotions and creams, and tracking every possible food allergy we could. And while my little munchkin wasn't allowing her newly developed skin condition to upset her pleasant demeanor, her itchy skin was making it difficult for her to fall asleep at night.

Until her momma made a discovery. With the help of my trusty sidekick, Paola, we've discovered the primary culprit. And now I have just one word for you.

Wool.

Turns out, my sweet little baby girl is allergic to wool. But put her in long pants or tights and a long sleeve shirt, limit her time on the wool rugs we have in the house, and encourage her to walk instead of crawl, and voila! Her eczema improves ten fold.

We were closing in on our hunch that it was some sort of contact allergy - bath soap, detergent, maybe some new clothes she was wearing - when Johnny scooped her up one afternoon, and held her for about 20 minutes. And by the end, she was covered in red patches. And what was Johnny covered in? A cashmere sweater!

Interesting thing is that while he was holding her, he was talking to a business associate who had stopped by the house. He noticed little Bernie's skin turning red right before his eyes, and asked if she had eczema. We talked skin conditions for awhile, and he convinced us to take another look at her food allergies. His granddaughter's eczema had been transformed by cutting out a few things from her diet. And yet, lo and behold, the reason for Bernie's sudden outbreak was right there before our eyes!

So - Johnny ditched his cashmere sweater for the evening, I lathered Bernie up with cream, and her skin settled down within a few hours. Good news is that we are now armed with information, and we can take steps to limit her outbreaks.

Before we made the discovery, I'd logged a considerable amount of time trying to educate myself and uncover the triggers - tracking her diet in a food diary, taking note of what she came into contact with, and doing some research online. I was jotting everything down in a pad, kind of a mini-version of my chronic control spreadsheet. And it worked! Sure, I was coming up with a bunch of negatives - no dairy allergy, no egg allergy, etc. - but I was eliminating culprits by the handful. Most importantly, I felt like I was doing something to help Bernie's cause. I wasn't just sitting back, watching those red patches spread. How wonderful to be informed, enlightened, and engaged!

And that's the beauty of the chronic control spreadsheet. I devote an entire chapter to it in my book - and it's the chapter I hear about most from my readers. It seems that the idea of tracking symptoms, medications, and lifestyle factors really does help. It provides clarity, gives you a little something to focus on, and can provide a helpful discussion tool for you and your doctor. Of course, too much of anything isn't ever good - so just make sure you don't go overboard on tracking. If you find yourself inundated, just flip to the second half of the Chronic Control chapter, and you'll find a few suggestions on ways to disengage - even if just for a few minutes. Sometimes, a mental break from our chronic illness concerns is just what the doctor ordered!

So while we haven't found a cure-all for her condition, we are making serious headway. I still use lotion several times a day, and because I can't limit her exposure to wool completely, we still have a bit of patchiness here and there to contend with, but overall, life with eczema is good.

Well, let's not get too far ahead of ourselves. Why don't we just say, "pleasantly bearable?"

3 comments:

So glad to hear that she is better and that you have an answer. (glad also for you that it was not food related (that sucks.) My son also had bad rashes when he was a baby, but it turned out to all be food related. It sure does feel better when you know what it is and can stop it.

I know I'm late in the game to this post, but have you figured out if it's the wool itself that's causing the problem or if it's the formaldehyde that wool tends to be treated with. I know that I break out in awful scaly rashes from wool treated with the stuff, as did an ex of mine. Really high quality wool sweaters and the like don't have it added, so they end up being fine. It's probably worth checking into if you haven't already.

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.